Tuesday, November 13, 2012

Gavin wants to die, but not really so it's okay

Iron Man was the costume choice of the day
Yesterday, Gavin started telling me that he wants to die.  I mentioned that we have been reading a lot of children's books on coping and such, and many of them use that term (which is okay with me).  But when he uses that word in a sentence like that, I can't tell you what it does to my heart. 

Gavin only wants to die in the context of missing Ty and wanting to be in heaven with Ty.  He says it with a smile.  Obviously he doesn't understand what it means.  He is three.  He thinks heaven sounds like a really great place, he loves God, too, so he thinks it would be fun to die.  When I told him that he will, but not until he is very old and has lived a fun filled life, he whines "No!  I want to die now!"  Oh boy.  How am I going to "un-do" this one?

The hardest part of these conversations is holding back my desire to say "me too."  Because the truth is, now that Ty is gone, I do not fear death in the slightest.  I look forward to going to heaven and seeing my baby again with every ounce of my soul.  I can't wait!  In the meantime, I will fill this painful time without him trying to enjoy the beauty around me, loving every second with Gavin and hoping time goes by a little faster than it used to. 

The foundation has a new home!
I am pleased to announce that the Ty Louis Campbell Foundation has a new office space!!  Our great friend, Dr. Charlie Marino, has given us rent-free office space in his building in Carmel.  It is the perfect space and I am so excited about this amazing gift.  Thank you, Charlie, for always thinking of us and helping the cause.  We love you so much. 

We need furniture, office supplies, pretty much everything... but I brought in some framed photos of Ty and some of his artwork and it's a start.  If you have any ideas on where I might find some quality office furniture that is being donated or otherwise thrown away, please email me at tylouiscampbell@gmail.com.  In the meantime, here is our new address. We are legit, y'all!  Next on my to-do list is to get our new website up and running :)

The Ty Louis Campbell Foundation
91 Glenieda Avenue
Carmel, NY 10512

Conference room.  We'll get there :)
Fordham Football
I wanted to make sure I posted a photo of our favorite team wearing their gold shoelaces and gold towels.  They had to pull some strings to get approval for all of this, and we are so grateful.  I pray this is only the beginning as more and more teams embrace the cause and wear gold to spread awareness.  On a local, hometown level, all the way up to the NFL!! 

I Carry Your Heart With Me
These words go through my head over and over and over.  All day.  I find this poem to be most true in every way. This describes perfectly the love we shared, and it brings me comfort. 

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)
- E.E. Cummings

My beautiful boy - I carry your heart with me (I carry it in my heart)


  1. You amaze me and I'm sure many others! I cannot wait for all the amazing things you will do for your SuperTy and all the Tys in the world. God couldn't have chosen a better advocate for the cause. This is just the beginning to the miracles that will happen because of SuperTy. Cancer is no match for a Mother's Love. Go get em'. Beat it up! God Bless.

  2. Gavin is such a darling. He's so cute in his costumes and the fact that he wears them for hours on end is truly adorable. Cindy, you have the most loveable kids. The whole world loves Ty and Gavin.

    Fantastic news about the office. Things are really moving forward. You really are superheroes and making it happen in Ty's honour.
    Ty's energy will move mountains. You're all amazing!

  3. Dear Cindy, I'm so happy for your new space. I can't wait to hear about all the wonderful things the foundation will do. So excited for the Campbell's.. Something to look forward to.

    I have to mention that u have noticed your still on your same schedule as you were when Ty was here.. I often wonder on these nights if your ok?!? I rember how you always said that when your alone at night with your thoughts that it's the worst for you.. I pray that it no longer as bad, that somewhere, somehow you are finding a glimmer of comfort and your thoughts are not as frantic as they once were.

    I hope so many things for you. You keep Ty in your heart and we keep you both in ours. I can't tell you how many times during the day that I pray for you all. I think of you do often and thinking of Ty always makes me smile. Thank you for sharing h with us and thank you for sharing your own personal journey of a Mother's hope... You have all been such an inspiration to me and my family. Thank you and God Bless you all.

  4. And also from E E Cummings', another thing that comes to mind when I think of Ty is-:

    "The world is mud-luscious & puddle-wonderful"

    More power to SuperTy!

    1. That's right! I posted that to his facebook once. I might need to use that as a key quote on the foundation website. Thanks for reminding me!

  5. We all Miss Ty. I'm so sorry.

  6. Hugs.. & tears, again.. xoxoxoxoxo Thinking of you every day...

    Millbrok, NY

  7. Cindy,
    To hear Gavin say those words is the sweetest and saddest thing. So sweet because kids say what they really mean and feel with no filter and that is how he feels (like you) he would do anything to be with Ty again including going to heaven. And so sad because Ty should be right there with Gavin trying to get the superhero costume. You are doing such an amazing job with him explaining Ty's absence. For him to say something like that at three means he really does understand. I am sure you and Lou are so gentle and patient with him as you help him to cope with missing Ty.
    New Office Space, so excited for The Ty Louis Campbell Foundation. This is the first step in many that are going to pave the way to making a difference in this awful fight against childhood cancer.
    Keep up the excellent work. I hope the office is filled with furniture soon. If I was closer, I would donate my own desk and work on my lap!

  8. I don't know that you can un-do it, but just keep explaining it to him the best you can. Love reading about him - the way he's processing it all seems just about right for his age.

    I'm so happy the foundation has a proper home - one more thing done to help make your job of changing the face of childhood cancer a little bit easier. I know with mommas like Maya and you sharing your boys lives and working so hard on their behalf, you're making a difference. Converting new troops for this fight - one person at a time. The army is growing. Just like the Fordham Football team making a difference and spreading the word - one team at a time all the way to the NFL. It will get done, I'm sure of it.

    Always thinking of you guys - SuperTy always and forever!!

  9. I was going to say exactly what Lynne said above, almost word for word.

    One other thing....try your local Freecycle chapter....you can find it at www.freecycle.org to hopefully find some free furnishings for your office. I have given away and received many free things over the years through Freecycle, and sometimes there is an office looking to unload some furniture or an individual giving away a desk, etc. :-)

    Kate on LI

  10. Jessica D Garrison NYNovember 13, 2012 at 9:06 AM

    Your posts always leave me speechless. I always need a while to recover, whenever I find a quiet time to read your thoughts. I know you are stronger than you ever wanted to be...but you are so strong!I am going to send you a book thru Amazon to the address you listed if thats okay. Its callled Angel Unaware. It is an easy read, you can easily read it in one evening. Its written by Dale Evans after she lost her 2 year old from a heart ailment. She penned it the week after her daughter passed, written from the perspective of the child..it starts from heaven where she started, her trip to Earth to teach unconditional love and sooo much more to her family, and then her return to heaven after her purpose was fullfilled. Its the most unforgettable thing I have ever read.Except for your blog. The other most unforgettable thing. He was such a special, beautiful angel, who left his footprints on the hearts of the world and in heaven forever. I hope you will find peace in all you and Lou will accomplish thru his spirit. The day you went to the Buddhist Monastary we were also talking of going there the very same day! It was such a beautiful day! Ty is forever in our hearts. <3 As are all of you.

  11. Lisa littlet320@yahoo.comNovember 13, 2012 at 9:52 AM

    I am so happy your foundation has a new home! I can feel that you are going to do amazing things in honor and memory of Ty. I have mentioned before that my son, Andrew, who is also 5 yrs old is a brain tumor and leukemia survivor. He was first diagnosed at 2 weeks old :( and we have been fighting ever since. My husband and I are pretty quiet and private but I understand and feel so much of what you say and I want to thank you for being my voice in the cause for better treatment and hopefully one day a cure for pediatric cancer. I would love to help out in anyway I can behind the scenes! I left my email address, please feel free to contact me for any type of event or fundraiser!! Your family is always in my thoughts & prayers ❤

  12. At night, I have my little conversation with God and last night I imagined what a joy it must be for God to meet Ty. I hate that Ty has left you, there are no words or reasons to understand why this has happened to you. I keep wishing that Ty's cancer would un-do itself and he would still be here. I'm happy that you found some words to comfort you, and though your heart is filled with sadness, Ty is there to help you heal. By the way, every picture of Ty is so beautiful.

  13. Korryn Wappingers Falls NYNovember 13, 2012 at 10:19 AM

    I started reading about your family a few days before Ty passed. I can't tell you how it has changed me and how I live. Your words are so amazing. I had a cousin I was very close with that was killed in the Trade Center on 9/11 he was only 33 years old with so much life still to live. He was a graduate of Fordham Univ. I don't think a day went by that my aunt didn't miss him or feel like a piece of her was missing. Like you she just wanted to be with him. If your child is 5 or 33 there is nothing worse than losing a child. It is my biggest fear! But i promise you after a while she did smile again she did laugh a real laugh. We always make him a part of everything we do. We talk about him look at pictures. I was so lucky to have had him in my life. I talk about him to my own kids all the time. Also, my dad was born 67 years ago with a form of skin cancer which is very rare. He struggled and fought everyday of his life, and still does to this day. Still with operations and treatments etc.. But people need to know people can live they can get through childhood cancers. And you starting this foundation will help people realize that. I thank you for that. If there is anything I can do to help with this foundation please let me know. It is a thing that is close to my heart. You really are an amazing woman!

  14. I am so very excited that the foundation has a new home!! I have been telling my husband so much lately how much I would love to help out in any way possible, please keep us all updated on the foundation and any way I can become involved.. I would absolutely love to be an advocate! I just feel the very strong need to become involved in this, Ty has touched my heart in a way I will never ever be able to explain. I am a different mom to my 4yr old son, I cannot begin to tell you how my outlook has changed. Your pain hits me straight to the core, I Love your family and pray for you all<3. The picture you posted of ty on this update makes my heart absolutely sink. Also, I really want to purchase a super ty shirt, I live in New Mexico so is there anything that can be purchased online?

    P.S. I love the title to your post today, I love Gavin's innocence. You guys are truly an amazing family. God bless!

  15. The pic of the football team choked me up. Such wonderful people in this world.


  16. So, so happy to hear of your office space. You truly are an inspiration to us all.

    I have been following your story since September and truly appreciate your candid take on this monster and what it has done to your family. I, too, often wonder if you are okay. Well, I'm sure you are as good as can be expected. I am a mother of a 14 month old boy and can't imagine the pain and suffering you and your family have endured, not to mention Ty.

    Please remember you are never ever alone. You have the support of countless strangers and your special angel in Heaven. While he will be waiting for you with open arms, please please enjoy your life for this moment. I'm sure that's what Ty would want. As I say this I am reminded of a saying that I myself have recently adopted... "Be here now." I tell myself this very often as to remind myself to always remember that we are never guaranteed our time here on earth so make every moment count. We are only guaranteed this moment, this last breath. Be. Here. Now.

    With lots of love, The Clark Family in Kingston NY

    PS. That poem is my absolute favorite. Always has been. Always will be.

  17. Congrats on the office space. What a wonderful gift ;) I am deeply sad for your loss and wish i could say the magic words to help you feel better but of course i know the only way out is through. Keep writing and hope to meet you someday :)

  18. This comment has been removed by the author.

  19. Morning,

    Thank you again for sharing your beautiful & courageous journey - and for sharing " SuperTy's " wonderful & heartfelt legacy.

    I was very pleased to learn that you are opening an office to continue the work of the Ty Louis Campbell Foundation. I am going to continue to be an active participant - and an active donor - to the Foundation in honor of " SuperTy."

    My continued thoughts & prayers are with you & your family.

    God Bless.

    - Rob Swan

  20. Cindy, your posts find a way into my heart and I think they stay forever. Ty and your family have forever touched me and I will do what I can to be an advocate for pediatric cancer research. The EE Cummings poem was in my wedding program...now that I am a mommy, reading it again, it has completely different meaning and I love that. Ty is always in your heart, you carry him with you always. Thank you again for sharing your beautiful boy with the world. He is the most gorgeous angel.
    - Lisa

  21. Ty was in my heart from the first time I logged onto your blog. My family and I have had many dinner time discussions about Ty and my son even wrote about him in his school journal and shared it with his class. Today my Son wore his Pajamas to school for the Pajama's for Ty fundraiser. Ty's journey is touching so many people, he will forever be loved!

  22. Beautiful poem an congratulations on the new site for the foundation!!!

  23. Cindy,
    My heart swells with gratitude for you and your family. I know you understand how Ty has managed to touch so many whom never met him in person yet feel as if we knew him. Thank you for waking me up and allowing me the privilege to join you and Lou in this campaign to find a cure for the children.

    I am so excited that you have an office for The Ty Louis Campbell Foundation. God continues to bless your efforts and has placed wonderful people in your lives. I am hopeful that somehow those of us not in New York will be a great benefit to the Foundation as well.

    Ty was brought into all our lives for a very special purpose. You have been brought into our lives for a very special purpose. Though you miss him terribly, and it is not fair that he be physically away from you...he is such a part of you and is with you always. What a blessing you all are to us! May we all now be a blessing to you and Lou, Gavin and even Ty through the Foundation.

    Stay strong beautiful lady. May God give you the strength you need, the words to speak to Gavin, and the peace you so deserve.

  24. XOXOXO

    I miss TY!!
    Baltimore Md

  25. Congrats on the site! I know that you will do great things with it. Ty is always on my mind...as are you and your family. Just this a.m. my 6 yr old son said "what if I go to heaven, I can see Papa again". I told him that heaven is a place where u go but can't come back from, and that he would see papa, but I wouldn't be there and I'd miss him more than anything". He then understood a bit more. See, kids say things, but sometimes don't really know what they mean. Gavin will grow up to onlu know what u tell him about Ty. I don't know, but perhaps talk about Ty, but only bring up heaven if Gavin mentions it. Sometimes kids need less information to handle things. They don't 'understand' like we do. I pray for you all the time. Ty was such a cute boy and seemed like a 'cuddle bug', just like my son. So I can't even imagine what your going thru. God Bless and I hope for u nothing but the best....and some healing to help u thru. Betty

  26. Cindy, You three are always in my thoughts and prayers. I am so grateful that you have shared with the world Ty and your experiences. Because of you, you have made me a better mom and person. I will always support funding for new cures for pediatric cancer any way that I can. A somewhat distant cousin (not one that I speak to daily) lost her son in May after he had battled pediatric bladder cancer for several years. While my heart broke for her, I never quite understood exactly what they went through with their son until I discovered your blog and it became so real to me. My cousin became quite isolated when she was dealing with the hell she dealt with so we did not know much about their struggles. Thank you again for sharing with the world your Ty. I know you guys will do amazing things. If you ever need any help getting the word out in Florida, please do not hesitate to contact me. Much love.

  27. I was always afraid of death and dieing as well. But everything changed 12/6/11 for me when my two year old Keegan went to heave with brain cancer. I know that feeling, that "how am I gonna live to be 80 years old without him HERE". I feel it quite often and it just plain old stinks. I hate it. I hate being separated with him there and me and my husband here and I HATE cancer. I am so sorry you are going through this and know there are people out here who "get it" if you ever wanna talk!

    1. I'm sorry about your loss too Beth. I hope Cindy does contact you. God bless you and your family! xoxoxo

  28. Gavin just looks adorable sitting there in the IronMan costume! I think it helps make him feel closer to Ty! My heart still hurts for Ty, isnt' that amazing that a little boy that I've never met can impact me that way. It just shows how special he is!!! Whenever you post pics of him, I feel a special sort of love for him. His smile is so infectious and just draws people in. I hug my boys longer because of him, he forever has a piece of my heart! I admire you and Lou, your strength is amazing. I look at your family and it exemplifies what family is all about... Love, strength, and a bond unlike any other! I miss Ty, I miss praying for his recovery, I really miss seeing his smiles in the pics you'd post, but I know that those smiles and courage will live on in so many hearts! He was a very special boy! He will continue to touch so many lives through you and Lou and Gavin and the foundation! He lives on through all of you! My heart goes out to you with much love!

  29. Cindy, my thoughts and prayers are always with you and your family. My heart breaks when I read your updates but I am thankful that you have continued to share your journey with us. I pray that you are all able to find the "joy" in living in this world.

    Congratulations on the new office space! I am very excited to see what the future holds for the foundation! I believe it will be amazing!

    God Bless....

  30. Cindy, as always my thoughts and prayers are with you, Lou and Gavin. On a brighter note, my fiance works for a large corporation and I'm almost positive they donate or throw away a lot of office furniture on a regular basis.... I will speak with him tonight and see if he can point me in the direction of who to speak to, I'm hoping I can help you get some great furniture!

    Your close-by friend in Hopewell Junction,
    Amanda :)

  31. Cindy - Heaven is an even more amazing place now that Ty is there. You will see him and hold him in your arms again... I am sure of it! Congrats on your new office staff. I have been searching for opportunities to make a difference here in Boise, Idaho. I would love to do something in honor of Ty.

    Ty - Thinking of you always. Hope you are enjoying great friends and tasty blue lollipops. Keeping you close to my heart, sweet boy.

    XOXO - Kylee

  32. http://rememberingmiracles.wordpress.com/2012/11/13/remember-ty/

  33. was so happy to find a ladybug in my room today, knowing it was Ty. What a beautiful thing it was to see it crawling around and feeling Ty's presence. He has and will continue to touch my life in the most powerful ways. Much love to you all. xoxo

  34. We are all so Proud of you Cindy! My goodness it must be extremely tough to be in your shoes, and the loss of darling Ty tears me apart, let alone yours :( I'm 10'000 miles away in little New Zealand, thinking of you and your family and the cause. I will fight for it, your strength and hope gives me strength and courage. You are amazing, well done!!! Look out for the small parcel I will send over. Melissa-Jane, New Zealand Mummy

  35. As always, every picture of beautiful Ty is just so perfect. There are no words to describe how our collective hearts break for you and for what you're going through, but I am glad that Gavin doesn't fear what he talks about, although I ache for him, and for how much he must miss his big brother.
    On a happier note - that is wonderful news, about the office! I know you're going to do amazing things there, and that Ty will be there, warming the place up and cheering you on!

  36. Wonderful news on the office space! I know in my heart that Ty's organization will be therapeutic for you and Lou and even Gavin! I want to thank you in advance for all the good work I know you all will do!
    Jennifer, Illinois

  37. What were the warning signs before Ty's diagnosis? What was the reason for the doctor visit?

  38. You go girl!! The Ty Louis Campbell Foundation will soar to depths unimaginable with the help of a very loving and courageous mother and the legacy of a true super hero, your Ty! We stand with you, Cindy and Lou! We will all do our part in raising awareness and funds for research of much needed new and improved treatments for pediatric cancer. We love and miss Ty so much <3. Please give Gavin a hug and a kiss....he is too cute for words! Poor baby missing his best brother. Bless his heart. SuperTy FOREVER <3

  39. What a beautiful poem. I had a knot in my throat reading about how you feel without Ty and what Gavin said. He will understand it will just take time. May God always bring you comfort during this healing time. Just remember Ty will never leave you. He will be in your heart always. You forever will keep his name in memory and bring so much attention to his foundation. God bless you and your family.

  40. Cindy,
    I think of you and your family often, I hope you will find some peace. I know in my heart Ty is not alone. He must be surrounded by the love of all of the mothers who are already in heaven and are with him always until you reunite with him.Much love

  41. I love that poem, so proper for you . I am still following your posts daily and am glad to see you and Lou and Gavin are striving and trying to move on. I will pray for you always and never forget Super Ty and all he has taught me. I miss Ty too,even though I never met him, your posts made me know him and love him and look forward to each morning to read how he was doing. I am sad now when I read your posts and how hard it is for you all. Please give Gavin and extra hug for me....Jean <3

  42. Cindy & Lou,

    OMG an office! How exciting and I think it will do you very well to get out of the house and work in a new place on the most incredibly important cause honering the most special little boy!

    Gavin is young and is unable to fully comprehend. You guys shouldn't worry, he will be ok. I mean he has the most amazing parents to guide him through this difficult time!

    I think about you guys everyday! My offer for the website still stands. . .let me know!

    Joy Marielle
    Baltimore, MD

  43. The poem is absolutely beautiful Cindy. So fitting...

    You are doing a marvellous job with Gavin. You are truly a beautiful family indeed...

    Wow, and now you have your own office... I can only imagine the good things that will follow!

  44. I have so many things I want to get off my chest. Wow, I am amazed at your strength and I would love Gavin to get a biggest hug from me. I feel sad that he wants to be Ty in heaven. I wish his 3 yo heart was happy and joyful and not grieving for his beautiful big brother. Ty, I miss out so much. I can't stand it that you are not here. I am embarrassed to say that because I never met him and I am a mom to two beautiful boys but I'm obsessed with Ty. I just love your baby so much. I also adore Gavin. We still say prayer and wish for Ty to be healthy every day and I can't to break the news to my kids that Ty is not here. With that said Cindy, if in any way shape or firm I can somehow help you or be a part of your foundation I would be so proud. Anything I can do it would be for me as if I will finally meet Ty.

  45. I love that beautiful poem and am so glad it gives you comfort! Julie in MN

  46. Wonderful poem. Sarah McLachlin's "Wintersong" is also the same way for me.

  47. I absolutely love that video you just posted of Ty. That kid NEVER stops smiling, it's insane. Gavin and Ty are SO amazingly lucky to have you and Lou as parents. Sending our prayers and beautiful thoughts to your family.

    Charisse in CA

  48. Cindy,
    You will make a difference....and Ty will be right there beside you cheering you on. Your courage, and strength continue to amaze me. I don't know how you do it...

  49. I have three girls and have been following your posts for awhile. I can't tell you how many times they have caused me to be more patient, to put down my phone, to say ok, sure I can hold your hand until you fall asleep even if I have a thousdand things to do. This poem was posted today by a friend who just lost someone and I thought I'd share it. Traci

    Death is nothing at all.
    ...I have only slipped away to the next room.
    I am I and you are you.
    Whatever we were to each other,
    That, we still are.

    Call me by my old familiar name.
    Speak to me in the easy way
    which you always used.
    Put no difference into your tone.
    Wear no forced air of solemnity or sorrow.

    Laugh as we always laughed
    at the little jokes we enjoyed together.
    Play, smile, think of me. Pray for me.
    Let my name be ever the household word
    that it always was.
    Let it be spoken without effect.
    Without the trace of a shadow on it.

    Life means all that it ever meant.
    It is the same that it ever was.
    There is absolute unbroken continuity.
    Why should I be out of mind
    because I am out of sight?

    I am but waiting for you.
    For an interval.
    Somewhere. Very near.
    Just around the corner.

    All is well.

    Henry Scott Holland

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